N.I.H undiagnosed disease program

N.I.H undiagnosed disease program (Read 2030 times)

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gal5883

July 09, 2009, 03:53:18 PM

Gina
Newbie

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Posts: 8

Hi everyone I am pretty new to this group although I joined a few months ago :)
I just wanted to tell you that Kylie got excepted into the N.I.H (national institute of heath) undiagnosed disease program. We have been trying since January and were told no early June. But I called and begged for them to look at her case further and we got our acceptance letter last week. We don't know when yet they are reviexing a video we made for them so they could see the symthoms for themselves and then they will be calling early next week! I am very excited for this. Thanks for letting me share!!
~Gina (kylie's mom)

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New28

July 10, 2009, 03:06:08 AM

Sr. Member

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Posts: 339

When all else fails, play dead!

I'm so happy for her!
Does NIH even have an undiagnosed disease program? Here, take a symptom to 5 different doctors, chances are you'll get 5 different diagnoses, and after a long time(10 years for me) they give up and send you away, or they accuse you of psychological problems(such is the power of the mind!) and send you to a shrink.

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ohtobehealthy

July 10, 2009, 04:34:50 AM

Sr. Member

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Posts: 263

oh bless her little heart!!!! what is her story did I miss it somewhere on here??? Would love to learn more, best of luck to you, Kylie and your family. I hope that they finally give you some answers. Its always hard to see the young ones suffering. I know I was suffering when I was young but no one was my health advocate so I am so happy you are finding the help she needs. I hope that something is found and she is brought some comfort. Please keep us updated on her progess and how things go! My thoughts are with you guys!! Huge Hug

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**Kristin**

First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!

Samantha

July 27, 2009, 08:07:04 PM

Group: Administrator
VIP Member

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Posts: 920

I Will Be Diagnosed !

Fantastic News Dance

Please keep us updated

Sammy

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